The End

And now we come to the final chapter of Nett’s life, when all hopes for a possible future and improved quality of life were finally dashed.

Two days after Nett’s second chemo treatment with new chemicals at the Northern Cancer Institute a sudden and horrible chain reaction of events commenced.

It started with a sudden seizure at home on Sunday 7 January 2018 which resulted in her receiving intensive care treatment at the Royal North Shore Hospital (RNSH).   She was found to have an abnormally low white cell count.   After a brief recovery she had another seizure there a few days later.  She was eventually diagnosed with cryptococcal meningitis.  This was an opportunistic fungal infection brought on by her low cell count.  She was critically ill and unconscious for several days, during which the senior ICU doctor advised Peter and myself “not to let your expectations get too high.”  With a sense of absolute dread we prepared for the worst.   But then, almost at the last moment, an anti-fungal medication was found to be the cure.  This was administered via an IV drip.  It saved her life but left her unable to walk after being bedridden for so long.

Nett received intensive rehab at RNSH to get her back on her feet with limited mobility while the IV treatment ran its course and cleared up the meningitis.  She was then transferred to Lady Davidson Hospital (LDH) in North Turramurra to continue her rehab.

Nett was finally allowed home on 5 March, two months after her initial collapse.  She now needed a four-wheel walker or a walking stick to get around, but just to be back in familiar surroundings after such a nightmare experience was an enormous relief to her and to me.

During these two months of hospitalisation at RNSH and LDH Nett’s support team were magnificent in their visiting and ongoing support.  Peter and Yvette came virtually every day, often with Leo and Miles.  Nett’s book club “bookies” Laura, Barbara and Saguna were frequent visitors, as were our neighbours from home.  Brian and Fran called in from Brisbane, joined in Sydney by their daughter Jo.  Yvette’s parents, Ian and Marie Hamilton also visited, as did my sister Gill and niece Jenny from Canberra.  All these visits helped keep her confidence up, badly dented as this was by the events of the last two months.  These visits continued after Nett got home.

It was then that Nett suffered another massive blow to her recovery prospects.  She was found by her GP to have a blood clot in her lower leg.  Presumably this was as a result of being bedbound for so long at hospital.  This was now a fatal blow in her ongoing chain of medical catastrophes.  It meant that she could not exercise enough to build up her strength for more chemo treatment until the blood clot could be cleared up by medication.   This was confirmed during what proved to be her last visit to Dr Sally at the Northern Cancer Institute.  This now meant that there was now nothing to stop the advance of the cancer through her body.

With restricted mobility, and still limited to getting around on her four-wheel walker, Nett was mainly confined to the house.  She spent much time watching television, which she always enjoyed.  She was a big fan of British crime dramas such as Midsomer Murders, A Touch of Frost, Dalziel & Pascoe, Inspector Morse, and others.  Many of these were repeats, but she didn’t mind!  She also especially loved being able to view the latest seasons of the blockbusters Game of Thrones and the US version of House of Cards.  From other genres she was also a great fan of the “Dr Who” and “Doc Martin” series over the years and of the QI quiz show.  She also greatly enjoyed the historical period dramas that were often on offer from the BBC.  She was very much an ABC watcher.

My role was now  that of a carer.  Nett was very distressed that I was having to be put in this position, but it was unavoidable.  I told her that as far as I was concerned this was just part of the territory of us being loving partners.  She would have done exactly the same for me had our roles been reversed.  She agreed and felt better about this situation.  From me she wanted lots of hugs and foot rubs and I gave her plenty of those.  She also undertook a course of Reiki massage which did much to ease her pain.

7 April 2018 was the date of Nett’s 78th birthday.  Peter, Yvette and the boys came round with a birthday cake to mark the occasion.  This is my last picture of her.

She is seated at our dining table with our kitchen behind her.  It is heartbreaking to see the tension and misery in her face and her painfully thin arms and shoulders.  She now needed to use one of our outdoor chairs for its armrests to support her in getting to her feet.  I don’t recall much of this occasion but it was likely that she would have had little appetite for birthday cake.  For me this picture is such a painful reminder of her suffering at the time.  Her quality of life was now absolutely abysmal.

Nett signed up as an outpatient at Neringah Hospital, a specialist palliative care institute in Wahroonga.  She was now facing the grim reality that her options were closing on her, and she wanted to prepare for this.  We updated our wills.  She wrote out instructions to me for the upkeep of our house and garden.  Her beloved brother Robert came for a visit from Bellingen.  She started writing her Life Story, her part of which has become Part One of this website.

There was nothing more that Nett could do to prepare me for life after her.  She knew that her magnificent support crew would also be there for me when the time came, and that has indeed proved to be the case.

And then a doctor from Neringah called in as part of their outpatient service.  She detected a breathing difficulty in Nett’s left lung and referred her for a scan.  This was carried out on Monday 14 May.  When we saw the film from this we saw to our absolute horror that, while her right lung was normal, the image of the other one was completely white.  Her lung casing had filled with fluid.  The Neringah doctor immediately referred Nett to the Emergency Department at Hornsby hospital.

We returned home from the scan clinic for Nett to pack her bag for another hospital stay.  She then sat down in her favourite lounge chair to rest before we headed to the hospital.  For the first and only time I saw a momentary look of despair in her face.  She said nothing to me but I think she knew then that this was now the end of the road for her.  She had been home for just two months from her previous hospitalisation.

I have an indelible memory of Nett closing the back door behind her for the last time on our home that we had shared for over eleven years, and then slowly walking down the sloping footpath, supported by her four-wheel walker, to where I was waiting for her by the car.  We then drove away from our home that she would never see again.

Nett was admitted to Hornsby Hospital.  On her second evening there her legs collapsed under her in the bathroom.  She had to be helped back to her bed.  After this she was never able to walk again.  A respiratory specialist arranged for Nett’s lung casing to be drained.  This resulted in the removal of some two litres of fluid.  This fluid was found to be cancerous and we were told that it would inevitably return in a few weeks.

There was now no other treatment that could be considered for Nett.  Because of her immobility it would be impossible for me to care for her at home.  So there was no other option but to transfer her directly from Hornsby Hospital to Neringah Hospital as a palliative care inpatient.  Nett took this news with quiet resignation.  For her there had been a sense of inevitability about what was going on around her.  She was on a downward spiral about which neither she nor anyone else could do anything.

The transfer took place on Friday 18 May.  Neringah was where her closest friend Sandra had been eight years earlier, but the place had been extensively renovated since then.  Most importantly there were now several doctors on their staff instead of the one part-time GP who had been there for Sandra.

Nett was assessed by one of these doctors on admission.  She made it clear that she did not wish to be resuscitated if that situation arose.  Nor did she wish to return to Hornsby Hospital to have her lung casing drained whenever it filled up again with fluid.  Her only wishes for her stay were that she would be as free from pain as possible and that she wanted to be able to communicate to the end.  This is how it turned out for her.  It is also worth noting that she put her trust at all times completely in conventional medicine.  She never had any interest in alternative remedies or “quack cures” to treat her cancer.

I was heartened to see, early on, that her spirit remained strong even if her flesh was weak.  A pastoral care worker called in to see her.  I gave her a long-winded waffle about how we were not religious and that this was a carefully considered position on our part, we were somewhere between agnostic and atheist, but we had nothing against religion, and so on and on.  Nett listened in silence then, when we were alone again, said sternly to me:  “Chris, that was verbal diarrhoea!”.  It was, but I was glad to hear that she wasn’t going to take any nonsense from me or anyone else, despite her situation.  She remained non-religious to the end and never had any thoughts of a last-minute death-bed conversion.

Neringah, being purely a palliative care institution, provided no remedial treatment.  They existed solely to ease the pain and discomfort that often came with dying.  A driver was implanted under her skin to feed whatever medication was needed for this purpose, and a nebuliser was set up beside her to ease any breathing difficulties that might arise.

The staff at Neringah took excellent care of Nett.  Her occasional bouts of abdominal pain were quickly and effectively treated by the doctors and nurses.  She had to be repositioned in bed by the nurses every couple of hours to avoid bed sores as she could no longer move herself.  Her helplessness meant that she now needed to be washed and cleaned by them.  She hated being in this situation but recognised that there was no alternative.  The nurses and staff treated her with absolute respect and dignity so that she never felt humiliated at any time.  She had to sleep sitting up to avoid reflux, but this had been her situation previously for several months now.

There was a convertible chair-bed in her room, so consequently I was able to sleep there overnight with her.  I only went home early in the mornings to shower, change my clothes and have breakfast.  This usually coincided with her time of being washed so as a result I was generally able to be with her for about 22 hours out of every 24.  There were always lots of little things I could do to make her more comfortable during my time with her.

Her conversations with me were generally light and trivial.  Everything meaningful that needed to be said between us had already been said.   It was essential at this time for both of us to be strong in our mutual support for each other.  This meant not distressing each other with pointless agonising over what lay ahead for each of us.  We had already been through all of this earlier.  To be present for each other was all that was now needed.

When we weren’t having visitors Nett watched TV.  There were also movies on a laptop that Peter provided with Netflix service.  She was particularly pleased to be able to view the latest series of “The Handmaid’s Tale”.  The original book on which this series was based had been the last of Nett’s book club’s choices a year earlier, and a very thought-provoking one too.  She often chatted about this series that she had just watched to those doctors and nurses who had also seen this.  Each day she asked me to read the papers to her as her eyesight was deteriorating, and she also got me to fill in the daily crossword from her supplied answers.

All our usual visitors continued to come so we were rarely alone for long.  Brian and Fran made a special trip from Brisbane to spend some time with her.  Nett was warm, gracious and polite with all her visitors, as she always had been, even though she would not be around to share the future experiences that they chatted about.  She even attempted her own humour, saying several times: “Dying is no fun at all!”  No-one laughed at this.  Our neighbour Margaret several times brought beautiful yellow roses from her garden which really brightened up the rather drab room that she was in.

Particularly heart-wrenching for Nett were the times when she farewelled each visitor, not knowing whether she would see them again for another visit or whether this would be the final goodbye.  It was, of course, just the same for the visitors themselves.  “I wish the doctors could tell me when I’m going to go,” she said sadly to me after another such painful farewell.  I especially remember seeing the utterly miserable look that passed between her and a particular friend when they said their goodbyes after what would indeed prove to be their last time together.

Nett talked over the phone to several people who couldn’t be there, in particular her brothers Richard and Robert, my sister Griselda and her niece Lyndal.

Nett never wanted anything from our home other than some of her make-up (which she applied to her face every day she was at the hospital up until her last day).  She wanted no jewellery, no photos, no mementos, nothing.  To me this said more clearly than anything that she now accepted that the world in which she had lived for over 78 years no longer had any relevance for her.  All she wanted was for me to be with her, and that to just hold her hand and make small talk.

Because of the cold weather she only ever left her room and the hospital building once.  She was hoisted into a wheelchair and taken out to a sunny spot in the garden where she chatted with Saguna who was visiting at the time.  Other than this, she remained in her room the whole time she was there.

Nett spent 26 days at Neringah.  Everything was very stable during this time and her condition changed very little until the end.  Thinking that things would remain like this for a while longer I arranged appointments on 13 June in the city for me to see my GP and my financial adviser about matters that needed attending to.  I arranged for Saguna to stay with her while I was away and for Nett’s podiatrist to come in to attend to her feet that same day.

The day prior to these appointments, 12 June, was like all previous days.  She did most of her favourite crossword with me reading out the clues for her and filling in the answers.  She watched the ABC evening quiz show that she liked, “Think Tank”, and was able to supply many answers before the contestants could!  Her mind was in full working order to the end.  We both retired early as normal. Then late that night I was awakened by her uncontrollable coughing.  I applied the nebuliser that was on hand beside her  and this gave her some relief.  A night-duty nurse arrived and increased her level of sedation through the driver that was fitted to her.  This got her back to sleep and I was able to also get some more sleep myself.  She was still asleep in the morning when I woke up.  I was told that she was not to be disturbed so I went home to shower and change.  She was still very drowsy when I returned.  With a grim sense of foreboding I cancelled the day’s appointments.  Saguna said she would come in anyway.  A doctor then confirmed my worst fears when he told me that it would now only be a matter of “hours or days” before the end.  I immediately called Peter with the news.

I sat with Nett, holding her hand and talking to her.  I said how much I loved her.  She responded in a barely audible whisper, as if from far away.  “Me too!” were her words, her last ones to me and the last time I was to hear her voice.  “Me too” was the shorthand phrase we had often used on such occasions to each other.  Then Peter came in and called to her.  She just managed to faintly whisper “Hi!” to him.  That was the last thing she ever said as she now lapsed into unconsciousness.  She had said what she needed to say to us.

The afternoon passed in a blur as Peter and I sat with Nett, talking to her constantly.  She never regained consciousness though she may well have sensed our presence and perhaps even taken in our words.  Saguna maintained her vigil outside the room.  A passing volunteer gave her a hand massage.  Yvette arrived with the boys.  Saguna then came in to her room to say a few last words to Nett before leaving.

The end came quickly.  At 4.15 in the afternoon of 13 July 2018 Nett quietly and peacefully took her leave of this world and slipped away.  I was holding her hand at the time, and her family were nearby, just as she would have wanted.

My immediate feeling, and Peter’s too, was a sense of relief that her suffering was now finally over.  She no longer had to endure the constant  pain, sickness and absolute misery of living in a body that had been continually disintegrating inside her through her last years.  Then, suddenly, a pent-up tsunami of grief that had been building up inside me for years was finally released.  It swept over me in a raging torrent that completely overwhelmed me.  I wept as I sat beside her, still holding her hand.  I have been submerged by this grief ever since.

Nett’s Life Story had now come to its tragic end.  The painful tasks now fell to Peter and myself to inform everyone of her passing and to prepare for her funeral.

Next page:  Aftermath